Abstract
Background: Achieving home care and home death is increasingly used as an outcome measure of palliative careservices.
Aim: To appraise the state of the science on dying at home.
Methods: Appraisal and narrative review developed from a plenary presentation at the European Associationfor Palliative Care (EAPC) 2012 meeting examining the research on variations and trends in place ofdeath, factors associated with dying in the preferred place, presenting evidence on outcomes forthose dying at home and suggesting future research questions.
Results: Meeting patients’ preferences and creating home-like environments has been a major concern forhospice and palliative care since its inception. During the 20th century, in manycountries, hospital deaths increased and home deaths reduced. Despite the fact that this trend hasbeen halted or reversed in some countries (notably the United States, Canada and, more recently, theUnited Kingdom) in the last 5–20 years, a home death is still a distant reality for the majority,even though evidence shows it is the most commonly preferred place to die. Epidemiological studiesidentified factors associated with home death, including affluence, patients’ preferences, provisionof home care and extended family support. Evidence about the benefits of home care is conflicting,but recent data suggest that holistic well-being may be greater at home.
Implications: We call for further analyses of variations in place of care and place of death and robust studieson how patients and families formulate and change preferences over time. Regular monitoring ofoutcomes, quality and costs of palliative home care is urged.
Aim: To appraise the state of the science on dying at home.
Methods: Appraisal and narrative review developed from a plenary presentation at the European Associationfor Palliative Care (EAPC) 2012 meeting examining the research on variations and trends in place ofdeath, factors associated with dying in the preferred place, presenting evidence on outcomes forthose dying at home and suggesting future research questions.
Results: Meeting patients’ preferences and creating home-like environments has been a major concern forhospice and palliative care since its inception. During the 20th century, in manycountries, hospital deaths increased and home deaths reduced. Despite the fact that this trend hasbeen halted or reversed in some countries (notably the United States, Canada and, more recently, theUnited Kingdom) in the last 5–20 years, a home death is still a distant reality for the majority,even though evidence shows it is the most commonly preferred place to die. Epidemiological studiesidentified factors associated with home death, including affluence, patients’ preferences, provisionof home care and extended family support. Evidence about the benefits of home care is conflicting,but recent data suggest that holistic well-being may be greater at home.
Implications: We call for further analyses of variations in place of care and place of death and robust studieson how patients and families formulate and change preferences over time. Regular monitoring ofoutcomes, quality and costs of palliative home care is urged.
| Original language | English |
|---|---|
| Journal | Palliative Medicine |
| Volume | 27 |
| Issue number | 10 |
| DOIs | |
| Publication status | Published - 2013 |
Bibliographical note
AcknowledgmentsWe thank Cicely Saunders International for hosting and funding much of the work presented.
Funding
The plenary that originated this article included data from studies and reports funded by theDepartment of Health, London Health Authority, Cicely Saunders International, the UK NationalInstitute for Health Research (NIHR), the European Commission’s 7th Framework Programme and theCalouste Gulbenkian Foundation, to whom we are most grateful. The PRISMA project was funded by theEuropean Commission’s Seventh Framework Programme [contract number: Health-F2-2008-201655] with theoverall aim to co-ordinate high-quality international research into EoLC in cancer. PRISMA aimed toprovide evidence and guidance on best practice to ensure that research can measure and improveoutcomes for patients and families. PRISMA activities aimed to reflect the preferences and culturaldiversities of citizens, the clinical priorities of clinicians, and appropriately measuremultidimensional outcomes across settings where EoLC is delivered. Principal Investigator: RichardHarding. Scientific Director: Irene J Higginson. Other PRISMA members: Gwenda Albers, BarbaraAntunes, Ana Barros Pinto, Claudia Bausewein, Dorothee Bechinger-English, Hamid Benalia, EmmaBennett, Lucy Bradley, Lucas Ceulemans, Barbara A Daveson, Luc Deliens, Noël Derycke, Martine deVlieger, Let Dillen, Julia Downing, Michael Echteld, Natalie Evans, Dagny Faksvåg Haugen, NancyGikaara, Barbara Gomes, Marjolein Gysels, Sue Hall, Stein Kaasa, Jonathan Koffman, Pedro LopesFerreira, Arantza Menaca, Johan Menten, Natalia Monteiro Calanzani, Fliss Murtagh, BregjeOnwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Robert Pool, Richard A. Powell, MielRibbe, Katrin Sigurdardottir, Steffen Simon, Franco Toscani, Bart Van den Eynden, Paul VandenBerghe, Trudie van Iersel. The project DINAMO is funded by the Calouste Gulbenkian Foundation withthe aim of enhancing advanced training and research to optimize home palliative care in Portugal.Principal Investigator: Barbara Gomes. Scientific Director: Irene J Higginson. Other members ofDINAMO: Pedro L. Ferreira, Vera P. Sarmento, Helder Aguiar, Ana Lacerda.